The Palliative Care Bill addresses many of the issues that need to be tackled if end of life care is to be improved to benefit patients and families, says John Hughes

Baroness Finlay of Llandaff has just tabled a first draft of the Palliative Care Bill in the House of Lords, which addresses many of the issues in end of life care that were highlighted in the Parliamentary and Health Service Ombudsman’s recent report into complaints around end of life care.

John Hughes

John Hughes

The report investigated tragic cases where people’s suffering could have been avoided or lessened with the right care. It estimated that dying could be improved for a staggering 355,000 people every year.

Baroness Finlay’s proposed bill echoes some of the issues highlighted in the ombudsman’s report, particularly with regards to the need for improved communication, care planning, out of hours services and pain management.

‘There’s a need for enhanced communication skills among health professionals’

Sue Ryder particularly welcomes the Parliamentary attention on improving end of life care as the bill addresses many issues for which we, as a charity, have been campaigning.

This includes our report with Demos entitled Ways and Means which highlights the need for enhanced communication skills among health professionals to improve the quality of care for people with palliative needs and to deliver more person centred care.

Difficult conversations

Recognising and accepting end of life means earlier and more honest discussions take place for patients and families about management options and decisions about the place of care.

However, this is often a difficult conversation for health professionals – and not because consultants and GPs have an unwillingness to get into the end of life care debate.

There are always several health professionals involved in a patient’s care and all need to be on the same page regarding whether palliative care is appropriate. GPs, for example, are put in a very difficult position if a hospital consultant or district nurse also involved in the care of a patient who is dying is singing from a different hymn sheet.

This is a common problem because different professionals can have different opinions about what is the best approach or most appropriate care, but the important thing is for professionals to discuss this together and agree before sharing this difficult news with people and their families.

‘Having difficult conversations early on gives the dying person and loved ones more choice and control’

GPs and consultants need to be much more at one with end of life discussions and have more open and honest conversations with each other and then with the patient and their loved ones. Agreeing the best approach as a team of professionals, and working more closely through multidisciplinary meetings – such as Gold Standard Framework meetings – help to break down these barriers.

The importance of linking up people with services as early as possible and ensuring the service they receive is timely and appropriate is essential.

Earlier discussions with patients mean they are likely to be referred to end of life care providers like Sue Ryder much earlier, which will help them have a better quality of life and, ultimately, a good death.

Having these difficult conversations early on gives the dying person and their loved ones more choice and control when the time comes, and will help people to die or be cared for in their place of their choice – which for 70 per cent of people is at home – and give them that time to come to terms and say goodbye properly.

Rethinking patient management

Helping patients recognise and accept the inevitability of approaching death, as reflected in Baroness Finlay’s bill, is a skill that all palliative clinicians have. However, this is not always something that those on NHS’s frontline care are comfortable with or have enough experience and expertise in.

It requires a culture change and a rethinking of the management of patients needing end of life care, particularly those in acute services who are predominantly focused on “cure”.

Better comprehension among all health professionals of pain control or pain relief for such patients and how to deliver this without an over-reliance on specialist palliative professionals is also needed.

‘Only 8 per cent of CCGs commission the level of support that dying people, their carers and their loved ones need’

The bill also acknowledges the need for clinical commissioning groups to specifically commission services that will provide 24/7 coordination – particularly for those receiving palliative care or dying at home.

This strengthens what we have been campaigning for with Dying Doesn’t Work 9 to 5, which calls for the government and local areas to prioritise access to 24/7 coordinated support services for those who are dying and their loved ones. 

Our freedom of information request to all CCGs as part of this campaign found that only 8 per cent of them actually commission the level of support that dying people, their carers and their loved ones need and deserve. This lack of provision leaves people scared, vulnerable and desperate for help during the most difficult time of their lives.

With 3 million people and counting expected to die over the next Parliament, Sue Ryder will be eagerly tracking the progress of Baroness Finlay’s bill in the House of Lords.

We hope all health professionals will pay attention to the key issues raised in both the bill and the Parliamentary and Health Ombudsman’s report.

Dr John Hughes is medical director at Sue Ryder

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